Delayed Update
In case you missed the post about why Jack is had surgery click HERE first:
Jack did great in surgery- it was a long, emotional morning but everyone was so sweet and helpful and so very understanding. Kayla and I in true to who we are cried one minute and then laughed the next. My favorite line in pre-op was this one
“and I was worried about a cold” … Kayla
Poor girl! She has done a great job keeping it together and knowing Jack needs her right now. I am so proud of her for putting aside her fears of unknowns and just stepping into a role that no Mom wants to step into.
This is how it’s gone down since Monday:
Monday afternoon- got up to room out of surgery around 1:00- Jack did great and there was no reason to expect problems.
4:00 first feed 15ml (1/2 oz)
7:00 feed 15 ml (both successful)
10:00 feed 30 ml (1oz)
1:00am feed 45 ml (1 1/2 oz) both successful)
4:00 feed 60 ml (2oz) seemed to be going alright until I heard what I thought was someone throwing a bucket of water of the floor- no buckets just Jack. His feeding came up and flew.
Tuesday- the whole day was spent trying small amounts and cleaning up bigger amounts. His surgeon (whom we like) kept reassuring us this was normal and that some kiddos take a couple of days. Well needless to say Jack wasn’t one of those cases that got to go home 18-24 hours after surgery. By evening Doctors suggested Pedialyte- and to leave the formula alone.
Wednesday- Jack is clearly hungry and NOTHING… I mean nothing has stayed down. Wednesday was by far the hardest day as Jack was miserable and frankly Kayla and I were exhausted and just wanted wonderboy to take a turn for the better. It is such a helpless feeling to know there is nothing you can do to fix it or make it better.
His Doctor on Wednesday started becoming very concerned about his nutrition (because at this point he’s basically had none) so they ordered a Home Parenteral Nutrition Program (TPN) About' target=_blank>TPN feed to run over a 24 hour period. With TPN nutrition there is a greater risk for tissue damage when run through a smaller vein (regular IV site) so after the nursehorrified us told us what to watch for things got started. After just over a hour Jack boy lost his IV site.
At 4:00 two IV team techs poked him twice and failed.
At 5:00 a peds flight nurse tried 2 places and had no success
At 6:00 the first doc from anesthesia came in and tried in both his legs… nothing.
7:00 She called a colleague who she said is more experienced and He tried once in his foot and looked and looked for another site.
At around 8:00 on the 8th or 9th try a neonatal flight nurse was able to get a line in on his head. Our poor buddy.
After a couple more attempts of Pedialyte and lots of rocking and even a chorus of Kayla signing the barney theme song it was close to midnight and they ordered a dose of Oxi to help Jack be more comfortable and he fell asleep and besides squeaks and squirms he stayed asleep until 8 this morning.
Now it’s Thursday (I think) and Jack just finished an upper GI study to see why nothing is staying in his little tummy.
Hopefully there will be a plan soon! REAL SOON!
Possible case scenario-
A PICC line to get feeds in.
A swallow study (if the GI doesn’t give answers)- a NG tube to get nutrients or formula in.
And the scenario Ilike best love most. That God just heals whatever it is and it just stops happening, Jack takes a bottle and Kayla and Him get to go home and live happily ever after (at least until he becomes a teenager)
Kayla getting some snuggles from Jack after his GI study this morning. His IV in his head caught us both off guard so now to help us deal with the stress we have started making antenna jokes…. hey ya got to do something. The NG tube you see will come out since the test is done and if they do need one there are smaller more comfortable ones for little man.
Jack did great in surgery- it was a long, emotional morning but everyone was so sweet and helpful and so very understanding. Kayla and I in true to who we are cried one minute and then laughed the next. My favorite line in pre-op was this one
“and I was worried about a cold” … Kayla
Poor girl! She has done a great job keeping it together and knowing Jack needs her right now. I am so proud of her for putting aside her fears of unknowns and just stepping into a role that no Mom wants to step into.
This is how it’s gone down since Monday:
Monday afternoon- got up to room out of surgery around 1:00- Jack did great and there was no reason to expect problems.
4:00 first feed 15ml (1/2 oz)
7:00 feed 15 ml (both successful)
10:00 feed 30 ml (1oz)
1:00am feed 45 ml (1 1/2 oz) both successful)
4:00 feed 60 ml (2oz) seemed to be going alright until I heard what I thought was someone throwing a bucket of water of the floor- no buckets just Jack. His feeding came up and flew.
Tuesday- the whole day was spent trying small amounts and cleaning up bigger amounts. His surgeon (whom we like) kept reassuring us this was normal and that some kiddos take a couple of days. Well needless to say Jack wasn’t one of those cases that got to go home 18-24 hours after surgery. By evening Doctors suggested Pedialyte- and to leave the formula alone.
Wednesday- Jack is clearly hungry and NOTHING… I mean nothing has stayed down. Wednesday was by far the hardest day as Jack was miserable and frankly Kayla and I were exhausted and just wanted wonderboy to take a turn for the better. It is such a helpless feeling to know there is nothing you can do to fix it or make it better.
His Doctor on Wednesday started becoming very concerned about his nutrition (because at this point he’s basically had none) so they ordered a Home Parenteral Nutrition Program (TPN) About' target=_blank>TPN feed to run over a 24 hour period. With TPN nutrition there is a greater risk for tissue damage when run through a smaller vein (regular IV site) so after the nurse
At 4:00 two IV team techs poked him twice and failed.
At 5:00 a peds flight nurse tried 2 places and had no success
At 6:00 the first doc from anesthesia came in and tried in both his legs… nothing.
7:00 She called a colleague who she said is more experienced and He tried once in his foot and looked and looked for another site.
At around 8:00 on the 8th or 9th try a neonatal flight nurse was able to get a line in on his head. Our poor buddy.
After a couple more attempts of Pedialyte and lots of rocking and even a chorus of Kayla signing the barney theme song it was close to midnight and they ordered a dose of Oxi to help Jack be more comfortable and he fell asleep and besides squeaks and squirms he stayed asleep until 8 this morning.
Now it’s Thursday (I think) and Jack just finished an upper GI study to see why nothing is staying in his little tummy.
Hopefully there will be a plan soon! REAL SOON!
Possible case scenario-
A PICC line to get feeds in.
A swallow study (if the GI doesn’t give answers)- a NG tube to get nutrients or formula in.
And the scenario I
Kayla getting some snuggles from Jack after his GI study this morning. His IV in his head caught us both off guard so now to help us deal with the stress we have started making antenna jokes…. hey ya got to do something. The NG tube you see will come out since the test is done and if they do need one there are smaller more comfortable ones for little man.
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